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Down's syndrome

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What if Down's syndrome is treatable? What if Down's children weren't born retarded but simply had a learning disability and metabolic disorder that could be corrected?

What if Down's syndrome is treatable? What if Down's children weren't born retarded but simply had a learning disability and metabolic disorder that could be corrected?

Parents have been led to believe that the profound mental retardation and physical handicaps of a Down's child are a direct result of the genetic defect a fait accompli of nature. However, a small group of motivated parents and doctors claim to have demonstrated that mental retardation and the profound physical defects associated with Down's syndrome are not all there at birth, but develop over time as a result of these metabolic imbalances.

If nutritional intervention is early enough to correct these imbalances, the evidence suggests that growth rate and cognitive development might be normalized, and the physical and mental features of Down's partially prevented or improved. Those who begin early enough claim their children even avoid the physical characteristics typical of the syndrome.

In Down's syndrome, the extra chromosome occurring on chromosome 21 partially or completely duplicates, leading to a genetic overload. Doctors call it "trisomy 21" (meaning that instead of two number 21 chromosomes ("somy"), the Down's person has three ("tri"). As genes create enzymes and proteins, this extra chromosome, which then occurs in each cell in the body, causes a number of metabolic imbalances from too many enzymes and proteins. These lead to the typical Down's characteristics: the underdeveloped nose, the epicanthal folds (folds of skin on each side of the nose which tend to make the child look Asiatic), small growth, waddled gait, difficulty in running, sparse, straight hair, underdeveloped jaws, flattened upper lip, oftentimes nearsightedness or crossed eyes, and the floppy, ragdoll feel.

Dixie Tafoya, director of Adoption Options of Louisiana, which places Down's children for adoption, and mother of her own 5 year old adopted Down's child, likens Down's syndrome to a recipe approximating a cake but with too many ingredients. "We can add the 'short' ingredients to balance out the 'extra' ingredients. In other words, we use nutrition to compensate for the genetic overdose."

Researchers have begun to recognize that Down's children share similar metabolic disturbances. The heart of the problem is abnormal levels of antioxidant enzymes too little catalase and too much superoxide dismutase (SOD) (Ann Genet, 1992; 35 (1): 8-13). This causes a profound disturbance of the antioxidant defence system. Ordinarily, levels of SOD, whose job is to mop up free radicals and convert them to hydrogen peroxide, exist in subtle harmony with catalase and glutathione peroxidase. But if there is too much SOD produced, the body overproduces hydrogen peroxide. When there aren't enough antioxidant enzymes to detoxify this H2O2, the dietary antioxidants we take in as food must finish the job. Many children and adults with Down's syndrome exhibit profound deficiencies of the antioxidant nutrients vitamin A, E, C, zinc, selenium and glutathione. With too little antioxidants, free radical production runs riot in each cell, causing problems with many major bodily functions.

Many Down's children also evidence abnormal thyroid activity (Ann Gene, 1990; 33: 9-15); even at birth, one per cent show signs of hypothyroidism (J Ped, 1984; 104: 545-9),which rises up to 10 per cent in childhood. This is 28 times more frequent than in the general newborn population. Untreated hypothyroidism can cause speech and hearing defects. However, this may have something to do with low levels of zinc. One study demonstrated that zinc affects the metabolism of thyroid hormones in children with Down's syndrome. Once given zinc supplements, the thyroid stimulating hormone and triiodothyronine levels normalized (Int J Neuroscience, 1992; 65 (1-4): 259- 68). Some researchers believe that the excess levels of SOD and other nutritional deficiencies, such as iodine and selenium, may be responsible for reducing levels of T3.

They are also often short in stature, largely because of abnormalities traced to a deficiency of one of the insulin like growth factors (IGF-1). In Down's, IGF-1 doesn't appear to increase in the first months of life, as it does in normal children (Arch Dis Child, 1986: 61: 48-52; Am J Med Genet, 1990; 7 (Suppl): 59-62). However, again too low levels of zinc may be the problem; in one study of 22 children given zinc, 15 increased in size (Am J Med Genetics, 1990; (Suppl 7): 63).

The pioneer of the nutritional approach is Dr Henry Turkel, who developed his programme more than 50 years ago. Dr Turkel developed a programme he called his "U series" a compilation of vitamins, minerals, digestive enzymes, essential fatty acids, amino acids and several drugs, including thyroid hormone (since many Down's children have thyroid problems) (J Orthomol Psychiatry 1984; 13: 272-6). Turkel came up against the American Food and Drug Adminstration, which prevented him from selling his formula in other states and blocked his chances of getting national approval for them. However, he did manage to get approval to sell his programme in Michigan and treated some 5,000 patients, reportedly with some success.

Dr Turkel's mantel has now been shouldered by Dr Jack Warner, a California pediatrician, who runs The Warner House, a non profit centre for studying the syndrome. Dr Warner's own regime combines a nutritional/metabolic therapy with physical therapy and developmental optometry, since many Down's children have sight problems. The combination of metabolic, thyroid and physical and opthalmological support appears to be behind Dr Warner's reported success rate. And unlike Dr Turkel, who used a Ritalin like drug and thyroid hormone, Dr Warner doesn't use drugs at all unless it's discovered that the child has a specific thyroid problem after testing their thyroid function individually.

Although Dr Turkel's policy was to give all Down's children thyroid hormone supplementation, Dr Warner finds that it is only necessary in about a third of cases and then only as an individualized regime depending on need once determined by test.

Of the more than 2100 patients he has seen, Dr Warner claims that most of the children in the programme are developing from near normal to above average intelligence, as many as 90 per cent are attending ordinary schools, and most are avoiding the chronic illnesses typical of the syndrome. If children come early enough, he says, they even avoid the more pronounced physical characteristics of Down's.

The usual Down's child has moderate to major developmental impairment and an IQ somewhere close to 55. According to California physiotherapist Ardith Meyer, once part of the team who offer physical therapy at the Warner clinic, with intervention, many move into the normal range (85-110), depending on how young they are when treated. In nearly a decade of working with these children, she said she has yet to see a single child who hasn't benefitted when started in the first year or two of life. Those children who don't progress tend to be older, with autistic tendencies and severe behavioral problems.

Dr Lord Lee-Benner, a medical editor of the Cognitive Enhancement Research Institute (CERI), an organization actively distributing information about "smart" drugs for Down's syndrome, visited Warner House, and saw eight children, from six weeks to 11 years mainly between two and five most of whom had just started Dr Warner's programme. Although all had so called "mongoloid" features, based on serial photographs of the children, Dr Lee-Benner believes that there was some improvement in facial features once they were treated.

Those on the programme averaged in the 50 percentile of growth on a normal child's growth chart, Dr Lee-Brenner said, compared to the usual Down's syndrome child, who scores on average below the 5th percentile. Of the eight children, all were in or moving toward regular school programmes (Smart Drug News, February 14, 1994).

Dixie Tafoya has made astonishing claims about her own child, Madison, who started on Dr Warner's programme at 22 months. She claims that in three months, her child's face changed from a flat, typically Down's face, to one that is almost normal and indeed in one photograph seen by WDDTY she does appear to be normal. Dixie claims that Madison's nasal bridge developed, her jaw grew to normal and her teeth straightened. At 34 months, she also had normal vision, when at two, doctors had said that her constantly twitching eye movements needed to be corrected with surgery. She also has long flowing blond hair, whereas most Down's children have sparse or slow growing straight hair.

Many of the doctors, in their enthusiasm to "correct" the deficiencies of Down's syndrome, are attempting to kickstart the brain into working better through "smart" drugs. One doctor has claimed that the neurological aspects of Down's syndrome do not connect properly and the transmission of information between the two hemispheres of the brain is garbled.

The drug most often used is piracetam, a cerebral stimulant much like Ritalin. Although piracetam is not licensed in the US, American parents import it through the UK, Mexico and other countries. In the UK it is sold as Nootropil, as tablets or a solution. Piracetam was originally developed for epilepsy, and is also used for dysphagia, or impairment of speech or memory, and dyslexia. It supposedly works by enhancing the neurotransmitter systems closely related to learning and memory functions, somehow by modulating the chemicals of the brain. It is supposed to improve organizational skills, memory, motor skills, verbalization and speech.

Dixie Tafoya claims that her child, who was developmentally delayed, spontaneously potty trained herself as soon as she was given the drug. She and others, notably CERI, promote piracetam as a perfectly safe drug. CERI not only provide continual information about piracetam and other brain stimulants, but a list of foreign pharmacies which supply the drugs. (It is legal to import a drug from another country for your own use so long as you don't sell it on to anyone else.)

Not even the manufacturer UCB Pharm Ltd, would make that sort of unqualified claim of safety, listing a host of side effects (see box, p 3). Furthermore, Dr Warner says he has seen many Down's syndrome children suffering with side effects, notably autism and epilepsy, while on the drug.

The other part of Dr Warner's programme is intensive physiotherapy and developmental optometry which consists of exercises to attempt to avoid knife happy opthalmologists, who favour surgery as a solution to the crossed eyes and other problems suffered by Down's children. This behavioural optometrist offers a number of tests on the children to find out if they have certain visual disorders (such as focus, depth perception, peripheral perception and coordination). He then trains them to overcome these problems. Dr warner's physiotherapists have special training in strengthening hypotonic children, who have lax joints and floppy muscle tone.

Dr Warner has also treated pregnant mothers carrying Down's children. When they are given special vitamin antioxidant supplements, it crosses the placenta, and he says that the children are in much better health with far fewer obvious problems when they are born.

So far, there are no studies to vindicate the work of Dr Warner and enthusiastic parents like Dixie Tafoya and also no one to police work with drugs like piracetam or the claims or products being sold. Since Down's children are usually assigned to the medical scrapheap, as accidents of birth missed by prenatal testing, there is very little work being done in this area. Consequently, it has been left to the parents of Down's children and interested parties like Dr Warner to experiment among themselves. Many such parents tinker with extra nutrients, such as amino acids. Even when other antioxidants are supplemented, says CERI, glutathione levels improve but don't normalize unless supplemented. CERI recommends other supplemental amino acids, including phenylalanine and tryptophan (which is available in the UK, but not in the US). Others are experimenting with melatonin.

Down's children also seem to have problems with collagen, the protein fibres which give tissues in the skin, cartilage, bones and tendons their strength and elasticity. Some parents supplement with collagen as well.

Dr Warner argues that drugs and huge doses of amino acids or tryptophan are not necessary once you've corrected the over accumulation of SOD through supplements with antioxidants. His biochemists have warned that glutathione only promotes SOD production. Furthermore, expensive blood testing for amino acid levels are useless, as they will change every day, depending upon what the child eats.

Until others in medicine become willing to believe that Down's children have potential, we have to take Dr Warner's word for it. Nevertheless, if his success rate is even half as good as he claims, it would have major implications for the entire prenatal machinery and its goal of eradicating the world of children whose problems might be largely overcome with a vitamin pill.